I am in remission from PMR but does the pain ever go completely ?

Thanks John .... that makes me feel a bit better, I'll see how it goes and give it a few more weeks.

The rheumatologist says I should start swimming again (it's just to get the time)  I have a bike but don't cycle as I'm afraid of falling off !!

All the best and hope you get down to zero soon - Lyn

Thanks so much Angela I consider myself very fortunate to be off steroids (and the other meds that go along with them !!) and reckon the pain I'm experiencing is negligible compared to that other sufferers have to put up with !!

Both replies to my post are very encouraging THANK YOU - Lyn xx

Thanks so much Eileen .... I'm hopeful my journey has been simple and I don't have any flareups !!  I intend to see the rheumatologist every 6 to 8months or so as he was (obviously !!) a lot more helpful than the doctor I saw originally, with the result I only saw a medical practitioner (the rheumatologist) once every 5 - 6months !!

I have started taking cider vinegar and manuka honey every morning and wondered if you'd heard whether that was beneficial ??

All the best - Lyn

One lady swears by Manuka honey to ward off all sorts of infections - didn't seem to make much difference to her PMR/GCA though! The question is - is it REALLY Manuka honey? There is no way the region where it is made could produce all the stuff sold as Manuka honey - whether it has the label or not! Cider vinegar? No idea - I'm very sceptical!

If you are only seeing your rheumy ever 6-8 months do keep an eye out for symptoms signalling a relapse. A study did show it is more common in people who are off pred so fast - so beware! Sorry to be a party pooper!

Hi Eileen - 18months (Aug 2014), which I know isn't long either !!

That's why I am going to still be in close contact with the rheumatologist.

No you're not being a 'party pooper' it's great to have also have made contact people who have first hand knowledge of PMR.

Forewarned is forearmed !! Thanks

Lyn, you did not mention if you worked while you had PMR and how much were you walking during treatment.  If you increased your activity recently, it is normal for the body to "complain" and it would need some time - weeks, perhaps longer to get used to new level of activity. If you were just as active during PMR, then I would carefully watch the symptoms.  We all have weak spots in our bodies.  Those are the one that would signal troubles ahead, like a cannery in the mine. For  me it is knee, that I had surgery to fix sport injury.

Sorry to barge in with question... but it is related to pred tapering. What is the best way to handle dose reduction to reduce chances of PMR coming back? I have read Bristol study, in which they suggest that reducing to 10mg and then staying at that level for almost a year before further reduction is the best way.  Are there any other information out there? Any experience that you can share here? 

It isn't a case of "stopping PMR coming back" - it is reducing the risk of the symptoms resurfacing. It is rather misleading calling this PMR - a better name would perhaps be pred-responsive PMR syndrome.

Polymyalgia rheumatica, many painful muscles, is actually merely the name given to a set of typical signs and symptoms which can be due to a wide variety of underlying causes. These causes should be ruled out first - because they include various forms of inflammatory arthritis, other diseases and even some cancers. Once the obvious candidates are ruled out then "PMR" as we talk about it can be considered and a trial of pred initiated - if it doesn't respond to a moderate dose of pred then it doesn't fall properly into the category. There are some things that will/may respond to the much higher doses - but they don't respond in the same way to 15-20mg so more investigation is called for. That is because for some things there are better approaches than doses of pred for an indeterminate length of time.

The PMR we talk about is the result of the activity of an underlying autoimmune disorder that leads to your immunesystem not recognising your body as self and attacking tissues as "foreign invaders" as it does in an infection - there are many such autoimmune disorders and the diagnosis you are labelled with depends more on the tissues affected than on what is going on - because they don't KNOW what is going on very often other than seeing the effects on damaged tissues/organs. There is also no indication of what causes the immune system to go haywire in the first place. If we knew then it would help identify a better treatment. Usually it is felt to be a series of stressful events that affect the immune systemuntil it collapses in response to a final straw and starts lashing out - and stress takes many forms in biology: trauma, emotional, mental, physical events can all be involved.

Autoimmune diseases can have all sorts of effects on the body and some actually destroy tissues (like Type 1 diabetes and unmanaged RA) while others just attack them for some time, eventually burning out and going into remission - at least for some time, sometimes permanently but the potential to return remains. It seems that what we know as PMR comes under the latter category - at least for the majority of people - but there is no way of knowing how long it will take. For about a quarter it can be a couple of years or less, for a half up to 4 to 6 years. The rest of us - even longer, sometimes for life. I've had PMR symptoms for 11 years at least (might be 12, I can't remember) and have probably had 3 major flares in that time. In the meantime, we use pred to manage the inflammation that the autoimmune disorder causes and which leads to swelling which, in turn, cause pain and stiffness. In PMR it is thought to be the microcirculation - the smallest blood vessels - that is affected, the swelling reduces the amount of blood that can be supplied to the muscles in particular so that they can't function properly.

There are two sorts of "remission": drug induced and natural. In either case the symptoms are minimal (or at a minimum perhaps some would say). In natural remission the autoimmune disorder is (relatively) inactive and so there are no or few symptoms. In drug induced remission the underlying cause is still active but a medication of some sort mops up the effects - in our case pred manages the inflammation, the swelling is also less, blood flow through the microcirculation (the tiny capillaries in the muscles) is improved and our muscles can perform more normally. How well the pred works also has an effect on how well we feel in the meantime.

Flares also come in 2 varieties: either the autoimmune disorder remains stable in its activity and we attempt to reduce the dose that manages it to a lower level than is required. The inflammation (which is triggered on a daily basis) mounts up and the symptoms return. It is also possible for the autoimmune disorder to crank up its level of activity - the inflammation increases and the dose that for months has been adequate isn't any more. That has just happened to me - I've been stable and really well on 4 or 5mg for about 18 months altogether, 3.5mg was too far a reduction. The last couple of months I've been aware of things not being right and about 3 weeks ago I felt as if I had flu - maybe I did, I probably also had a urinary tract infection but antibiotics seem to have sorted that and I felt great for a week. I thought the infection had done it.

Then the familiar hip pain and stiffness returned. Flare. A flare due not to me reducing too far but to the underlying disorder being more active. And there is a difference for me I realise - if I reduce too far it is just aches in specific places which immediately disappear when I go back to the old dose and it didn't affect my "performance", in fact, activity reduced the aches. This sort of flare makes me feel ill, as if I have flu is the best way to describe it and is one of the listed symptoms, Instead of being able to manage our morning walk for over half an hour around a circular path in the village and at a reasonably brisk pace, I'm struggling to get up the short incline into the village, never mind walk all the way round, at any pace. My thigh muscles and knees feel like jelly and I am totally out of breath - it happened from one day to the next. I feel reasonably OK at home not doing much physically speaking - but do anything even remotely "exercise" and I'm not. I'm back to 15mg, where I started 3 1/2 years ago, and do feel slightly less awful!

You can't reduce in smaller steps or more carefully than I do - I am the author of the "DSANS" method after all! I reduced from 15 to 4 mg over nearly 2 years without inducing either a flare or steroid withdrawal pain and have been stable for also nearly 2 years. I couldn't get further - but the last attempts were less return of symptoms than fatigue, mind-numbing fatigue. I suspect my adrenal glands weren't waking up, otherwise I would probably have managed to get even lower, I felt different, I thought it might be a case of all gone autoimmune disorder. Another friend who reduces in a similar way also had this feeling different effect and DID get to zero for several months. But the symptoms are back, she was back to 10mg this time and has accepted that.

There is no way of knowing which drawer you will fall into - you identify the lowest dose that manages the symptoms well and use that to stick at until the autoimmune disorder goes into remission. Choose to accept a slightly too low dose and the inflammation will probably build up until it reaches a level at which it is too uncomfortable to bear and you will need more pred. The DNANS approach does that pretty accurately. It also helps avoid the discomfort of steroid withdrawal which, for some people, can be severe and last up to a few weeks.

But no reduction approach, the Bristol one or mine or any one else's, can get you to a dose that is too low to manage the effects of the existing level of activity of the autoimmune process without symptoms returning. Nor will it prevent the PMR returning - because the illness is there, just like a birthmark or scar you are covering with theatrical quality makeup. Thin the cover down and you will see it again.

Oh dear Eillen, have just read your post, and hope you are feeling better soon....this damn PMR is awful, it`s the ups and downs that are so difficult....hope you can reduce and feel well again soon......and be able to get out and about when the better weather returns!   I think when I get to 5mg....if I`m feeling ok...I`ll stop there, will probably be too afraid to drop lower!  Good luck....

Thank you, Eileen for the very helpful information. I am sorry to hear that you are having such a difficult time. This is a predatory beast lurking in the bushes ready to pounce! I hope the upping of the steroids works soon. I'm not sure where I am at the moment as I am following your approach and am at 9.5. I should be fully at this by next week but I'm not sure if I am experiencing a flare or is it withdrawal. I have been doing a bit more......I know but......I am going to stick it out but I know I felt fine on 10mgs! I realise it's a bit of trial and error so I'll see how it goes. I wonder if the rheumatologist who advises staying on 10 msg for a year is right! 

 

WOW! Thank you Eileen for taking time, in spite of your current condition , to answer my questions.  I am so hungry for information, because I believe that it will help me in understanding better what is going on with my PMR and in general.

My takeaway is that, although underlying reasons for PMR syndrome are unknown, they NEVER go away ( kind of depressing). Few lucky ones have their own adrenaline gland produce enough cortisol to suppress the symptoms. Some must add low dose of pred to supplement adrenaline gland.  It seems that any other inflammation problem, like a flu or bladder infection can overwhelm body's immune system and "push" body into flare.

I am still wondering, if the PMR impacts only skeletal muscles, or is it also attacking internal organs? I am in particular curious if it impacts blood flow microcirculation of the heart or any other muscles essential for supporting basic functions ( lungs, stomach, etc)?

When you feel more energetic, please let us know what your thoughts are on this. Again your time and knowledge is very appreciated.

Thank you!

The group says it reduces the rate of flares to 1 in 5 rather than the more usual 3 in 5 experienced with the more common reduction plans. So it isn't perfect either! Quite a few people have mixed the two - seemingly quite successfully as far as I can gather though obviously that is just anecdotal. I'd say it was worth trying - I think most of their flares come when patients are trying the 1mg at a time drops below 10mg. But surely you can imagine the response we'd get if we suggested that "Stay at 10mg for a year."!!!!!

But that said - I was at 10mg for a very long time and look at me! Everyone really is different in how they experience PMR and pred as well. I had 5 years of PMR with no pred - and believe me, feeling useless this week or so isn't as bad as that was with almost constant pain and stiffness. I was restricted in what I did then and at present I still appear to be able to walk gently on the flat - just not up hills! What was most peculiar just now was when we got back I walked up the stairs to the second floor as we almost always do and I felt better than walking up the relatively gentle slope into the village. Was it just the length of time I'd been out I wonder? I used the lift last week - I couldn't face trying the stairs but it didn't even occur to me this morning. The weather is hardly enouraging to go out for a walk but I suppose I could go and see - but I'll be in Innsbruck on Wednesday with a need to go into town for shopping (to the source of Coleman's mustard and English cheese). Innsbruck itself is on the flat!

Thank you, Eileen. I'll go with withdrawal at present. Yes. I can imagine staying at 10mgs would cause upset amongst the GPs! How strange that you managed the stairs which would appear to be more challenging than a gentle slope. The weather is very enticing here today. We have a yellow ball in a blue sky. I think I'll soak it up before it changes and I forget what it looks like! Innsbruck sounds like a nice trip and I hope you are able to enjoy it. I take the mustard fore granted but my choice would be Scottish cheese. 

No worries Nick - I can sit at the computer and write (as you see!) - I just can't walk up the blasted mountains I live in the middle of! It's my contribution to the support charities my friends set up after "meeting" here on this forum originally. At the time there was next to no support for PMR and GCA, just a couple of message boards the other side of the pond but they have folded since then. Scotland already had a charity, but the next was the northeast of England one and then the others came later. There are now 3 forums running in parallel with a few people, with and (now) without PMR/GCA, who are active on them all, like me. It's pointless leaving them alone - they'll just reinvent the wheel over and over again!

No - I don't think it is necessarily anything to do with the adrenal glands at all. Them not kicking back in is either an aging thing and their function has fallen away anyway and you would have got there eventually whatever or they lost interest when they weren't needed at the higher doses which signal they don't need to produce more - like the ballcock on a toilet cistern stops water flowing when when it is full. They can go wrong the other way too - producing too much naturally and causing Cushing's syndrome. The replacement bit doesn't come until you are below 7mg and in some people it never comes providing they reduce further slowly enough.

The pred is being taken in PMR for its antiinflammatory effect and (almost certainly) it works because its action is mediated in some way via neutrophils (one of the varieties of white blood cells). They have been found in excess in tissue in GCA and other vasculitides. PMR just affects small capillaries but there is no evidence it affects the capillary beds of other organs - just skeletal muscle (and maybe skin but that's my theory) so it is called PMR because of the muscle effect. On the other hand, other forms of vasculitis DO - and they present with different symptoms and so get different names. They may present with PMR symptoms - but they will have other things too like renal involvement or dodgy lungs and respiratory tract problems. You really don't want one of them - some are really nasty and even life-limiting. If you have to have an autoimmune disorder then PMR is definitely the one to choose - and to be honest, used properly, low dose pred is quite a pussy cat compared with some of the medications used in these other vasculitides. It's just everyone is terrifed of it! Every drug can affect some people adversely - and some worse than others.

Oh Dear Eileen.  This isn't good news about your current state of affairs! I do hope things stabilize quickly for you.  Can I ask why you jumped to 15 mg??  I know we all have to manage our symptoms based on our own experiences.  However, it would be interesting to know why you made such a major increase AND also, the schedule you will use to titrate down.

I oftern fine myself in the dilema of determing if a set of circumstances is a flare or not and your sermon is most helpfull..  I passed my laptop to my Hubby to have a read as well.  My husband has been pretty uderstanding and sermons like this one only serve to increase the understanding.

Thanks Eileen.  Feel better soon.

Cheese? So would mine - but that isn't going to happen! They manage plain Cheddar and the one that is the five different layers: Cheddar, Gloucester, Red Leicester, Cheshire and Lancashire I think. A different shop has Wensleydale with cranberries, Sage Derby and Stilton. I don't use them much - I love the local cheeses and the supermarket has a magnificent selection of Italian ones but a change is nice and OH won't eat "funny" cheese.

So that's where the yellow thing went - 1 minute of sun on Sunday, none so far today, after a full day on Saturday. It isn't raining - just heavy cloud in the air I think, still yuk! 

Not just the GPs - patients as well! Every few months someone arrives telling us they are going to be off pred tout de suite - it isn't going to beat them. You can imagine what happens!

Because my GP said to! I wanted to try 10mg but she just looked at me! She is rheumatology trained so is pretty good. I tried 15mg and felt pretty good next day, then tried 12mg and didn't so went back to 15mg last night (I take the sort of pred I have at 10pm) and feel much better today. I even walked into the village without collapsing AND walked up to the second floor where we live when we came back rather than take the lift!

How will I reduce back down? Don't know yet! I'll cross that bridge later! I am far less desperate to reduce than most of you - I'm really a jam today person and I also know that, so far, pred doesn't seem to have done much permanent damage. Vasculitis can do a lot of that too so I'm very happy to keep it well controlled.

I have to reduce 1mg at a time and I developed the "Dead slow and nearly stop" concept - it'll be a mix of that!

You just confirmed for me how:

-we have to accept this illness on a very individual basis;

-we have to learn to read our own bodies in terms of what may be happening when things go awry;

-we have to manage the dose and timing of medication based on our own experience. 

We all have a personal life puzzle to live with and some of the pieces change shape on us from time to time.  The amazing advice, reasearch and anecdotal evidence provided through this forum and others has really helped me sort things out from time to time.

 

Thanks and good luck getting back to your previous plateau.

Exactly Jean - unfortunately the doctors still can't come to terms with those concepts!

Someone who works will need more pred to survive than an 88 year old lady who happily sits at home for much of the day. The person who works is at a greater risk however of the long term side effects - because with the best will in the world, the 88 year old lady is unlikely to have a fight with PMR and pred for as long as the working person will. So it is a bit daft to tell her she MUST get off pred asap. But at the same time - if the younger person stops pred too soon they won't be able to work. They do struggle with it all - despite all the training!

So sorry you are feeling so unwell.  Do you need a reminder to treat yourself as though you really DO have the flu?  No more struggling up and down those hills until you feel better!  Hot drinks, a good book and keeping warm....

so sorry to hear about your setback ,hope things improve soon carolk

not good.

Walking uphill has the toes higher than heels and we lean forward in order to progress which stretches all sorts of leg and other muscles differently. Its a very different motion to walking up stairs where each step is horizontal. Maybe sounds like something out of Monty Python but walking backwards up the hill is probably easier

Fatigue I can't help with except to know how utterly overwhelming and frustrating it is.

PS its probably why on really steep trackes steps are often cut. Another trick is to walk across the hill, traversing upwards then turn, like one would ski down really steep stuff.

Hi Eileen,  Who minds the minder???   I hope OH steps up to the mark!

No better woman to manage the Pred. but consider also  a few weeks of warmth and quiet self-indulgence. . . .

Thinking of you and sending hugs your way.  T 

You jest Juno!

I'm fine - honestly - I know what to avoid: climbing hills! But it is winter, it's disgusting weather and I have no intention of going for a walk up a hill! I'm not even suffering from fatigue believe it or not - just jelly muscles!

I recognised the flare quickly - and I'm not scared of increasing my pred dose. Never have been and never will be. I'm a trifle tee'd off but that's all.

OK so I'll stop worrying about you!  It's funny you talking about your 'jelly muscles' as my main worry is about my 'jelly bones' !!!    T x

 

What - all of them? It's only my quads that are jellified! Knees felt a bit strange, especially the right medial collateral ligament that was torn nicely 5 years ago and I can feel again - but that's all improved today. Most bizarre...

No, not all,  just the most important ones in the back - awful but improving... . Glad you're a bit better.  Take care (ie.no skiing, ice- skating or mountain climbing!)  T

No, not all,  just the most important ones in the back - awful but improving... . Glad you're a bit better.  Take care (ie.no skiing, ice- skating or mountain climbing!)  T